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May 2007 ISN News

Raising Scleroderma Awareness in May 2007!

The nonprofit International Scleroderma Network thanks the following people who have purchased awareness items such as books, brochures and bracelets. Brochures are 50 cents each and include a Systemic Scleroderma Symptom Checklist. The teal silicone bracelets say "SCLERODERMA" and "SCLERO.ORG" and are $2.50 each. Posted 05-31-07. (Also see ISN Secure Shops)

Joseph Agro
Gizelle Bernier
Nan Blackwell
Kristina Blake
Stacie Brink
Susan Campbell
Lori Carn
Patty Crane
Jose de Carlos
Sarah Cornelius
Elena Farina
Julie Ford
Kristi Forman
Derrick Harge
Claudia Hilburn
Margaret Jackson
Anna Johnson
Jacklyn LaPerriere
Jason Lee
Thomas Lukcso
Mary Sue Madden
Pearl Martinez
Teresa McLaughlin
Melinda Peterson
Barbara Pierce
April Quate
Samantha Rudesill
Toni Spangle
Suzanne Verschneider
Christina Wilson
Michelle Zagorski

Pulmonary Hypertension Registry of Scleroderma by SCTC

Pulmonary Hypertension Registry of Scleroderma (PHAROS) is a multicenter study of systemic scleroderma (systemic sclerosis) patients in the United States. Posted 05/26/07. (Also see Pulmonary Hypertension)

NIH: Now Enrolling for Family/Twin Study

Families with Twins or Siblings where one has Systemic Rheumatic Disorders (Rheumatoid Arthritis, Juvenile Rheumatoid Arthritis, Lupus, Scleroderma, or Myositis) and one does not. For information on the study, call the NIH patient recruiting office toll free at 1-800-411-1222 (For TTY: 1-866-411-1010). National Institutes of Health Clinical Center (NIH). Posted 05/26/07. (Also see Clinical Trial Open Enrollments, Scleroderma Research Registries and Causes of Scleroderma: Genetics )

In Loving Memory of Jack Christiansen

The International Scleroderma Network thanks to the following people for their comprehensive donations to tackle scleroderma research, support, education and awareness in loving memory of Jack Christiansen. Re-posted 05-26-07. (Also see Donate in Memory of Jack Christiansen and ISN Donations In Loving Memory)

Mr. and Mrs. Wm. Annen
Georgia Beston
Richard Christiansen
Mr. and Mrs. Ray Gross
Illinois Tool Works Foundation
Anne McCormick
Shirley Mjoen
Mr. and Mrs. Richard Revor

ISN Volunteer Wanted: Polish/English Translator

We have an immediate opening for a volunteer to edit and translate scleroderma patient and caregiver stories from Polish to English. Usually this would be about 2 stories per year, plus some email correspondence. Interested? Please send an email to [email protected]. Posted 05/25/07.

Raising Scleroderma Awareness Now!

The nonprofit International Scleroderma Network thanks the following people who have purchased awareness items such as brochures and bracelets. Brochures are 50 cents each and include a Systemic Scleroderma Symptom Checklist. The teal silicone bracelets say "SCLERODERMA" and "SCLERO.ORG" and are $2.50 each. Posted 05-03-07. (Also see ISN Secure Shops)

Joseph Agro
Nan Blackwell
Susan Campbell
Lori Carn
Julie Ford
Margaret Jackson
Thomas Lukcso
Mary Sue Madden
Pearl Martinez
Teresa McLaughlin
Melinda Peterson
Barbara Pierce
Samantha Rudesill
Christina Wilson

Carrie Maddoux: ISN Sclero Forums Manager

Carrie Maddoux: ISN Sclero Forums Manager. Carrie has been promoted from Support Specialist to Manager for the ISN Sclero Forums. Carrie, also known as Jefa, has been an active member of the ISN Forums since its beginning in October 2006. We thank her for her desire to contribute even more support to this family of friends. Posted 05-16-07 (Also see Sclero Forums)

Carrie Maddoux: ISN Support Specialist for Sclero Forums

Carrie Maddoux: ISN Support Specialist. The real people who are posting in ISN's Sclero Forums suddenly become that much closer when we start posting too. I am glad you have found us, and hope that you will find as much support here as I have. I am a retired electronics production manager/manufacturing engineer living near Glasgow, Scotland with my husband, Jim, and our whitefaced cockatiel, Poirot. We both write novels, short stories and poetry and before I became ill, I edited two literary journals. Posted 05-07-07. (Also see Sclero Forums)

Erin Eton: ISN Support Specialist for Sclero Forums

Erin Eton: ISN Support Specialist. I am very honored to be a part of the International Scleroderma Network's Sclero Forums because of the hope and support that it brings to such a wide range of people. I am a mother, wife and graphic designer. My desire is to support those affected by scleroderma and related illnesses with a positive outlook, friendship, and firsthand experience that others can relate to. Posted 05-07-07. (Also see Sclero Forums)

Thank You to Lisa Bulman's Pampered Chef Party for Scleroderma!

Lisa Bulman's Pampered Chef Party raised over $750 for the nonprofit International Scleroderma Network! Special thanks go to Lisa Bulman, Doris Christopher, Christine McMahon (Consultant), Pampered Chef, as well as to Carol Webber, Lee Brazad, and everyone who purchased products. The proceeds help us tackle stellar worldwide research, support, education and awareness for scleroderma and related illnesses. Thank you! Posted 05/03/07. (Also see Lisa Bulman, ISN Fundraiser)

In Loving Memory of Jack Christiansen

The International Scleroderma Network thanks Georgia Beston for her comprehensive donation to tackle scleroderma research, support, education and awareness in loving memory of Jack Christiansen. Posted 05-01-07. (Also see Donate in Memory of Jack Christiansen and ISN Donations In Loving Memory)

Go to ISN News: April 2007
 
Most Recent Donors

Winn Schillberg
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!

In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.

 

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